Back to the Food Allergies

I joke that I live in a zoo. It’s kind of literal, we do have a crapton of kids, pets, other people’s kids, etc. It’s also kind of a metaphor for the controlled chaos we have going here between work, kid activities, my activities, our hobbies, and just life in general. One of our underlying, longstanding issues is of course the life threatening food allergies that Dorothy still has, that she always will have. We have done our very best to keep everything she does as normal as possible but the undercurrent is always there. Because we have constructed many strategically placed barriers, sometimes we as a family, her friends and her teachers can almost forget. Almost. Well, until we have an issue.

I’ve talked a lot in the past about the 504 Plan in place at school. It has many classroom modifications in place and lunch room procedures that allow Dot to operate within school safely, and hopefully without fear of allergic reaction. This ADA plan is in place because the severity of her allergies is debilitating. It is a disability. She reacts violently not just to consumption of tree nuts, but has a long history of reactivity to proteins left behind on surfaces and particles in the air. 

Over the last couple of weeks something within the classroom has changed. We can’t pinpoint exactly what is going on, but my suspicion is that one of the students got some new hand lotion and has been touching things. Dorothy has been to the nurse 6 times for hives that start on her right arm. The hives obviously itch, and travel quickly. Within minutes they cover her upper body. She is given Benadryl, and once they subside she is sent back to class. The problem here is that the Benadryl is a Bandaid. It is reactive to a problem that she isn’t supposed to have to actively worry about at school. Her teachers continue teaching, she misses class work, misses material that she is responsible for, and then returns to class sleepy. This can’t continue. 

She has been moved to the front right of the room, she no longer shares supplies (we need to add this to her 504 for 6th grade, though why 5th graders are still sharing is beyond me), and has been given her own white board. The custodian is being reeducated on how to clean her desk. The white board is a bit of a problem because she can’t leave it in her shared locker, she is concerned that her locker mate will touch it. Now that I’ve written this out, I’m going to call and ask that she not have a shared locker, and also ask to modify her 504 to include the supplies and locker now. The students are all being reeducated along with the teachers on how to prevent allergic reactions, and mandatory handwashing upon classroom entry has been enacted. Dot is concerned that the other kids will resent her for the changes. She doesn’t want to be different. We are working on this. Right now, her safety is number 1, but I have to address the mental aspects as well. I don’t want this for her.

Every time we deal with the big Pink Elephant in the room I have a little cry, and then I put my brave mom face back on and deal with it head on. Right now I’m still having my little cry. I know that we all send our kids out the door everyday and hope they will return, freak things happen all the time though. The problem with my girl is that the “freak thing” could be a simple as a kid having honey nut cheerios for breakfast, or a granola bar, or having washed their hair with Tres’eme shampoo and then hugging her. At the end of the day though, I have to assure myself that I’ve done every.single.thing I can to keep her safe, if something breaks down and fails I though, I will have to deal with that too. I try not to go there very often, but when I let my guard down, when I stop being vigilant…ugh. I’m done with this train for now.

Anyway, education about food allergies is ongoing. I wish there was another name for the type of allergies we deal with, something that everyone would “get”. But there isn’t.

I’m emotional about this today. I’m looking for a presentation/video that can be shown to 5th graders to help them understand.

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Lessons learned…

When Dorothy started the day lolly-gagging along, I should have just decided to forego the Muffin’s with Mom, sponsored by PTO at the school. But no, I pressed on and forced the issue, prodding her to hurry up and get moving so we could get there right when it started. We raced out the door and made it to the school cafeteria before the rush.

We step up to the area where the server will fill our plates and filling the table are the giant muffins from Sam’s Club, notoriously known for not only having tree nuts in the proper muffins, but for extreme cross contamination. I’ve bitten into the chocolate and blueberry muffins in the past and been greated with stray walnuts. Muffins are clearly not an option for Dorothy, and because we are eating with Dorothy, Dustin and I pass on these muffins as well. They show us some “sugar free” muffins from IGA and tell us that these wonderful muffins are either chocolate or blueberry. Perfect, we can eat bakery goods from our local IGA without issue, Dustin and I take blueberry, Dorothy takes the chocolate. Add some fruit and off we go.

I bite into my muffin and OH MY GOD. It is a banana-nut muffin, chock full of walnuts. Crap. I remove Dorothy’s chocolate muffin from her plate cause god only knows what is in it. Dustin’s blueberry muffin is also a banana-nut muffin. Great. I give him Dorothy’s chocolate muffin and give Dorothy a banana. Dorothy was already a dramatic mess this morning, so the tears just start flowing. Now she’s afraid that someone will touch her and that she will be hurt. I assure her that I’ll call her teacher and that Mrs. Ivie will have everyone wash their hands before touching anything in the classroom.

We come home and I feed Dorothy breakfast before John takes the kids back to school. I called the teacher, she assured me that every child in the room would wash hands and that all hard surfaces would be wiped with Clorox wipes.

I recognize that we cannot keep Dorothy in a bubble and that she will be exposed to tree nuts. However, she should be able to attend school events without having to worry. She has, what I thought was, a comprehensive 504 plan, but this is the second PTO sponsored event at the school where the presence of tree nuts on a grand scale was an issue, the first being the Fall Festival when the PTO specifically requested items with tree nuts to be brought in by Dorothy’s 1st grade for mass distribution at the event. When we revise her 504 plan for next year I will see what can be added to the plan so that she can safely participate in events such as Muffins with Mom and the Fall Festival.

Lessons learned:

1. Don’t ever assume that even though the same people are running the event as last year, and that you spoke to them at length last year about the nuts, that they will a)remember or b)care.

2. Don’t ever assume that an unpackaged food is what someone says it is because they probably don’t care enough to really know.

3. Don’t ever forget that you are your child’s best advocate and that they count on you to keep them safe.

4. It’s a big, bad world out there, full of nuts both literally and figuratively, both are equally dangerous.